Martin Sarah, Trevor-Jones Emma, Khan Sabyha, Shaw Keelan, Marchment Deepti, Kulka Anna, Ellis Catherine E, Burman Rachel, Turner Martin R, Carroll Liam, Mursaleen Leah, Leigh P Nigel, Shaw Christopher E, Pearce Neil, Stahl Daniel, Al-Chalabi Ammar
a Department of Basic and Clinical Neuroscience , Institute of Psychiatry, Psychology and Neuroscience, Maurice Wohl Clinical Neuroscience Institute, King's College London , London , UK.
b Nuffield Department of Clinical Neurosciences , John Radcliffe Hospital , Oxford , UK.
Amyotroph Lateral Scler Frontotemporal Degener. 2017 Nov;18(7-8):569-575. doi: 10.1080/21678421.2017.1349151. Epub 2017 Jul 18.
Care for people with amyotrophic lateral sclerosis (ALS) has altered at King's College Hospital over the last 20 years. The clinic has been a multidisciplinary, specialist, tertiary referral centre since 1995 with a large team with integrated palliative and respiratory care since 2006. We hypothesised that these changes would improve survival.
In this retrospective observational study, patients diagnosed with El Escorial definite, probable and possible ALS between 1995-1998 and 2008-2011 were followed up. The primary outcome measure was a chi-square test for the proportion of each cohort surviving. Kaplan-Meier survival analysis and Cox multivariate regression were secondary analyses.
There was low reporting of some interventions. Five hundred and forty-seven people were included. Survival between the cohorts was significantly different (p = 0.022) with a higher proportion surviving during 2008-2011. Survival time was 21.6 (95% CI 19.2-24.0) months in the 2008-2011 cohort compared to 19.2 years (15.6-21.6) in the 1995-1998 cohort (log rank p = 0.018). Four hundred and ninety-three cases were included in the Cox regression. Diagnostic cohort was a significant predictor variable (HR 0.79 (0.64-0.97) p = 0.023).
These results support the hypothesis that integrated specialist clinics with multidisciplinary input improve survival in ALS.
在过去20年里,伦敦国王学院医院对肌萎缩侧索硬化症(ALS)患者的护理方式发生了改变。自1995年起,该诊所就成为了一个多学科的专科三级转诊中心,自2006年起配备了一支大型团队,提供综合姑息治疗和呼吸护理。我们推测这些改变会提高患者生存率。
在这项回顾性观察研究中,对1995 - 1998年以及2008 - 2011年期间被诊断为埃尔埃斯科里亚尔确诊、很可能和可能患有ALS的患者进行了随访。主要结局指标是对每个队列存活比例进行卡方检验。Kaplan - Meier生存分析和Cox多变量回归为次要分析。
一些干预措施的报告率较低。共纳入547人。各队列之间的生存率存在显著差异(p = 0.022),2008 - 2011年期间存活比例更高。2008 - 2011年队列的生存时间为21.6个月(95%可信区间19.2 - 24.0),而1995 - 1998年队列的生存时间为19.2个月(15.6 - 21.6)(对数秩检验p = 0.018)。Cox回归纳入了493例病例。诊断队列是一个显著的预测变量(风险比0.79(0.64 - 0.97),p = 0.023)。
这些结果支持了以下假设,即具备多学科投入的综合专科诊所可提高ALS患者的生存率。